Hello everyone. I’m feeling overwhelmed at the moment and a bit helpless. Husband was diagnosed with Parkinson’s 17 years ago. He’s now 73. His progression had been very slow up till last year when he suddenly went downhill very rapidly. This was attributed to the stress of caring for ageing parents one of whom has dementia. Plus he feels guilt at the amount of care I had to take on with him and his parents as he’s an only child so there’s no one else to share it with. Nowadays his main symptoms are lack of strength, freezing - which has led to falls, apathy, anxiety, excessive daytime sleepiness, tremor and rapidly deteriorating motor skills. His speech is poor, a childhood stammer has returned and he drools a lot which he finds really embarrassing. At social gatherings with family or friends he doesn’t take part and usually falls asleep. None of these symptoms were present 18 months ago. He takes Cocareldopa and Pramipexole, but suffers with low blood pressure too so now takes Fludrocortisone for that as well. His sleep at night was so poor, he now takes Melatonin, which does seem to have helped but his daytime sleepiness is still awful. And he can fall asleep even standing up! His Parkinson’s nurse moved his pramipexole to last thing at night to try and alleviate the daytime sleeping but it has had no effect. Also his cocareldopa was reduced slightly but that has led to a worse tremor which was never a problem before. It just seems that we go one step forward and then ten steps back at the moment. We saw his Parkinson’s nurse in March and have had a phone call with her in early May as well. I just don’t know if I’m being unrealistic in expecting the meds to help more. Am I? I hate seeing him like this when he has always been so active and so fit. He says he’s ashamed of how he is, which breaks my heart. I’m a practical person who always tries to solve things. But I can’t solve this and I wonder if we just have to accept now that this is it. The downhill path so to speak. Sorry if that sounds self indulgent. Just don’t know if I’m clinging on to hope things can be better than they are now.
Hi Suzy,
Sounds like you’re both having a hard time
Stress can be devastating for pwp and will increase symptoms exponentially I believe.
If there is a way to reset the nervous systems this would help . A change in focus to break the loop or spiral he is in.
I believe low BP can be caused by the medication?
Things I believe worth researching are nervous system reset, red light therapy photobiomoduation, , keto diet, intermittent fasting, exercise for PD,
Best wishes to you both .
Hi suzyr, im going through a similar experience with my husband, he is 68 and has had PD for 9 years. Its the sudden collection of symptom changes ive found hard to fathom. However, i know everyones journey with PD is completely different. Im not ready to accept its a permanent deterioration, im hopeful that some more medication add ins will reduce some of the worst new symptoms. I try to raise his spirits with a positive attitude, not so easy for him to get that same feeling just now, but time will tell. Im getting a lot of support and inspiration from pd uk leaflets, as well as research online, listening to other people with pd tell their stories and whats helped them. I hope things improve for you both very soon
Best wishes.c
Thanks Lar. He did used to do a lot of exercise but lack of coordination and strength coupled with apathy has led to a reduction in that. I will try and get him back into it. As I know that did help. And I’ll look at the other things you mention too.
Hi Jandc. I do try and see the glass half full most of the time. I just want my husband to have the best quality of life he can have for as long as he can. But Parkinson’s is so variable and unpredictable. Nothing ever seems straightforward. I am going to talk to our Parkinson’s nurse again and see if she can advise what else we can try.
Hi suzyr,
If he doesn’t use his muscles he can have rapid muscle loss sarcopenia. The old age use it or loose it springs to mind.
I am 80 and that’s something I need to avoid. I use 3 kilo dumbbells as my discs have gone in my back.
I also do standing up and down 10 times in the morning along with a stretching exercises. Walking is a tremendous exercise gets everything circulating. I walk the dog three times a day .
I believe your husband lack of sleep and apathy are a challenge, you have to be patient with him.
I believe if he exercises his sleep will improve.
You need to see where he is on the strength scale, can he stand from sitting how many times , can he lift a small dumbbell what is his limit, he can do these dumbbell exercises sitting. Once you know where his limits you can halve the reps and do them 2 or 3 times a day. Then check his strength a month later as a guide.
Use it or loose it .
Best wishes
dear SuzyR and Lar
Thank you for placing your comments on here.
I am in the early stages of PD and everything is vague. I can’t even fathom how to use this site. But your comments really help.
Best wishes
sooty
Hi Sooty, thank you for sharing.
Starting this journey with Parkinson’s can feel overwhelming, especially in the early stages, but it’s great that you’re reaching out and connecting with others. Don’t worry about navigating the site - everyone here is understanding and supportive. If you ever feel lost or unsure, don’t hesitate to ask - we’re all here to help each other. It’s so encouraging to know that suzyr and Lar’s comments were helpful to you - this community is all about sharing, supporting, and learning together.
If you ever need further guidance or have questions, our free and confidential helpline is a great resource: 0808 800 0303. Sending you lots of positive thoughts as you take each step! 
Parkinson’s UK Moderation Team
Good afternoon Suzy … I am 71 & I have a lot of the symptoms your husband has although no where near as bad. I am also on Co-careldopa and I have taken Melatonin for my serious sleep problems.
Something I have done recently is to get a number of second opinions on what is wrong with me.
One of these consultant, a man I consider a top neurologist specialising in Parkinson’s and sleep issues looked at my datscan and thought it normal. The previous opinions were that it was abnormal. A further opinion from a top neurologist said that there were minor abnormalities shown on the datscan.
I had been off the Co-careldopa for two months to see if my sleep issues would improve … they didn’t … Also I felt my symptoms were worse. So I went back on the Co-careldopa and my symptoms improved. We all now feel that I do have Atypical Parkinson’s but that my symptoms are mild. The bad gait freezing I have is thought
to be something else, not Parkinson’s.
So I have seen three further top neurological consultants and am no further forward in finding out what is wrong with me and fixing it.
My three main ailments are sleeping, gait freezing and fatigue. I can’t walk more than 200 yards, I have gait freezing episodes when I stand still or sit down and I have fatigue. Also numbness and pain in my left leg and feet and toes and my right foot that is sometimes painful and swollen.
My advice to you would be to get a second opinion from an expert in the field. A review if you like. I went privately through the health insurance I have. A consultation costs around £250 if you are without health insurance. If you want to go the NHS route then you will need to find an expert near to you that takes NHS referrals.
I suspect my suggestion is your only viable option. Some of your husbands symptoms might not be Parkinson’s and are not being treated.
Any questions do ask.
Steve2
Thank you so much for sharing your experience, Steve2.
It’s really helpful to hear your perspective, especially as you’re dealing with many of the same symptoms as suzyr’s husband. It sounds like you’ve been through a lot, seeking second opinions and trying different approaches to managing symptoms. It’s great to see you staying proactive about your health and exploring all options.
If you need any additional support or guidance, our helpline is a great resource. It’s free and confidential, and the team can offer advice on managing symptoms and accessing further care. You can reach them at 0808 800 0303.
You’re both showing so much strength, and the fact that you’re reaching out for support and sharing your struggles speaks volumes about how much you care. You’re not alone in this journey, and together, we can keep seeking the best care and solutions
Parkinson’s UK Moderation Team
Hi Suzyr, your compassion and determination shine through in your writing. Thank you!
Others have and will offer more advice than I can around hubby’s sumptoms/treatments. All I can suggest is that sometimes the best thing you can do for him is to do something just for you. Are you in touch with the local carers support organisation/network?
Simon
Hi Lar. Yes he can do sit to stand and also lift dumbbell. He has always done weights as well as exercise bike. And he still does both but to nowhere near what he did a year ago. But even with that he just doesn’t seem to have much strength in his arms and legs. Or is it that the Parkinson’s means his brain isn’t telling his limbs what to do? For example he can’t lift his legs to get into bed. His tremor means he often can’t lift or carry things. So maybe it’s not a question of strength. More about brain signals not getting through? So frustrating for him. But I will encourage him to continue with exercise. We’ve signed up with our local Everyone Active gym as we found out through our local Parkinson’s group that they offer PWP free membership and their carers too (for a more limited time I think). Sadly he’s not felt confident enough to go yet but I’m going to keep encouraging as and when he can.
Hi sooty. I know this forum has been a great help to me even if I don’t post often. Just reading what others are experiencing can help you feel you’re not alone. We have used the helpline too on several occasions. And the advisors and Parkinson’s Nurses on the helpline have been amazing. So helpful. So reach out to them if you have any worries or concerns about your Parkinson’s. Take care and know you’re in a supportive community on here.
Hi Si. Thank you for your kind comments. I am so lucky to have amazing friends and family who support us both. But especially as a carer, I have people who I can offload my feelings to without judgement. I try on my down days to talk to them rather than let my husband see me low. That helps so much. I do also have “me time”. I started an art class in January and I absolutely love it. 
Hi Steve. That’s interesting to hear your journey and how you’re dealing with it. I am going to reach out to our Parkinson’s nurse again and discuss things with her ahead of our consultant appt in October. I think in my husbands case his symptoms are typical of Parkinson’s, but I really don’t think his medication is right at the moment. Complicated by his low BP and poor sleep.
The question I would have for him or her is whether the Co-careldopa causes the
low blood pressure and sleep problems.
Another question I have is what non-parkinson’s medication is your husband on.
Steve2
He takes Fludrocortisone for the low BP. Melatonin for sleep (which has helped with his sleeping at night). He also takes Finasteride for prostate issue and statin for high cholesterol. We know the Finasteride can lower BP but he has to take it or his symptoms worsen significantly. Hence the Fludrocortisone to balance things out.
Hi Suzy,
Your post rings so many bells with me, I was diagnosed in 2011 and carried on almost as normal for a few years. Then my Wife of 66 years be came seriously ill with pulmonary fibrosis, My two daughters were brilliant but of course I was with her 24/7 and so was her main carer. (if that sounds like a moan it is not mean to be, she deserved a medal as bi as a dustbin lid for looking after and putting up with me for all those years) she finally lost her fight for life last October. And now I am falling all over the place my balance is zero, my speech is atrocious I have 4 Botox injections every 3 months in my saliva glands, these do help and I top myself up with a puffer thingy, that is the last of my moans, to be more positive I have an appoint at Derby with a consultant in 3weeks and I am on the list to see about my ears as I am wondering if my poor balance stems from there, as I have had ear trouble since I was a nipper now 87 this month. So all I can do is say all the very best wishes from me and stick your chin out and let life take another sock at it. PS forgot to mention I had a new aorta valve in my ticker cheers Kowabins
Hello Kowabins. My sincere condolences for your loss and sorry I haven’t replied before now. Your attitude and spirit are wonderful. Keep doing whatever you’re doing. Wish I had your resilience.